The decision to disclose a chronic illness is not an easy one. When I was first diagnosed, I only told a few people outside of my family and friends.
There were a few people in my work world who knew me well enough to know something was wrong, so I told them first. But then I waited almost six months before disclosing further, in part because I was afraid that people would want to “help” me by not giving me assignments or not inviting me to meetings. I wasn’t worried about people not being nice; I was more worried about them killing me with kindness. Or, to be precise, killing my career. I wanted to be able to say, “Look, it’s been going on for a while now and I haven’t missed a beat, so don’t treat me any differently.” But when it came down to deciding exactly when to disclose, it was really because it had come to a point where the amount of energy it took to hide was making it harder to conceal my condition.
The first time I ever heard about people truly concealing their illness over the long-term (at least people who weren’t famous like Michael J. Fox) was when I went to a meeting of the Team Fox Young Professionals of Boston (now Team Fox Boston). The group was primarily designed to be networking and support for professionals who had family members with the illness. In fact, not only was I testing the limits of the “young” part of the Young Professionals group description, I was also the only one there who had Parkinson’s. Yet to my surprise, this amazing group of people opened my eyes to the disease’s impact in a whole new way. Several people I met told stories about their parents who had spent decades hiding their condition from the world. I remember the poignancy with which one young woman spoke of learning to deftly evade inquiries from concerned friends and neighbors about her father’s health. (She blamed his awkward movements on a bad back.) She also shared that her father had recently apologized to her for having made her lie for so long.
I wasn’t worried about people not being nice; I was more worried about them killing me with kindness. Or, to be precise, killing my career.
Last fall I was at a Parkinson’s fundraiser and sat down next to a gentleman in his early 60s. Of course I sat down next to a fellow Parky—we don’t do well standing around with a cocktail for very long! (Note to fundraisers: at events for Parkinson’s, please make sure to have enough seating for all the Parkies. And don’t serve steak. The cutting will take us hours!) The gentleman told me he had just recently retired, had sold his business and after a decade of concealment, had finally come out publicly with his diagnosis. He was in sales, and didn’t want his vendors taking product lines or territory away from him, either if they were worried he wouldn’t be effective anymore, or if they thought this was their way of “helping” him with his PD.
There are countless other stories I could share. I can’t advocate whether or not any individual should disclose their illness publicly or privately. And I’ll leave it to another time and place to talk about the many issues involving employment law and equal protection about health and disabilities. It just strikes me as incredibly time-consuming and exhausting and stressful for all sides to keep these things under wraps. I will never know exactly how my decision to disclose has impacted my career. But I do know it felt good when a friend recently shared the link my first blog post, mentioning her own battle with chronic illnesses and attempting to conceal them. She wrote that my “big mouth and brave pen helped me decide to stop that nonsense and use that energy for other stuff.” I’ll leave you with a response I gave to her.
“And we both have SO much OTHER stuff to give and do! Michael J. Fox has a great saying about PD (or any chronic illness) being like an unruly pet. If it is properly exercised and fed and watered, you can leave the house and go on about your day. If you ignore it, it WILL eat your sofa and pee on your floor. So let’s get real and acknowledge that our bodies need tending and then get on with the rest of it. We got this, girl. XOXO.”
Of course, by “We got this, girl,” I mean every single one of you - man or woman, old or young, disclosing or not, we got this.